Category: medical care

SoCS: My friend Angie

I have written before about my friend Angie. I’m thinking of her today because next month will be the tenth anniversary of her death. I’m thinking about things we missed over these years, such as supporting each other as our eldest children married. If she were still alive, she would probably be on the school board still, and I’d have a clue about what is happening in the school system, something that is hard to do when you no longer have children young enough to be in K-12. She would have supported me through the health travails of our elders and I would have supported her in the same way. Even though she has been gone for a long time, I still miss her.

Friends are forever.
******

This week’s prompt is:  acquaint and/or friend.

This is a February and Linda and Bee are joining forces. First, Bee’s badge and link: https://justfoolingaroundwithbee.wordpress.com/2015/02/22/love-is-in-da-blog-february-ping-back-post-rulessuggestions-week-4/

Love Is In Da Blog

And this post is part of Linda’s Stream of Consciousness Saturdays. Please join us! You can find the rules here:  http://lindaghill.com/2015/02/27/special-edition-friday-prompt-for-socs-february-2815/

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SoCS: What is seen can’t be unseen

Once something has been seen, it can’t be unseen, however much we might wish to erase it.

Part of the reason I don’t watch many scary movies is that the images haunt my dreams. I can still remember some of the shock I felt seeing the original theatrical release of “Jaws” as a young teen and the way it haunted my dreams.

Some of the most haunting things I have seen have been family medical things. A look of terror in the eyes during an intensive care disorientation episode. A bad reaction to a medication that caused uncontrollable jaw clenching with resultant biting of cheeks.  A child suffering tremors.  Seeing bones through skin when most of the flesh and muscle have wasted away.

Even years later, these memories make me shudder.  Even so, I can’t wish that I had not seen them, only that they had not existed to be seen.

This post is part of Linda’s Stream of Consciousness Saturdays. This week’s prompt is scene/seen.  Join us!   http://lindaghill.com/2015/01/30/the-friday-reminder-and-prompt-for-socs-january-3115/

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May as well finish up just Jot It January, too!  http://lindaghill.com/2015/01/01/just-jot-it-january-pingback-post-and-rules/

Re-blog: Quagmire

A reminder to all of us not to judge others. We usually don’t know what they are dealing with.

Dr. Barbara Chaffee

The link below leads to a few paragraphs and a short video clip. Even if you want to ignore the text – and the rest of this post, for that matter – watch the clip. It is part of a documentary nearing completion on the life of Dr. Barbara Chaffee, Binghamton physician, mom, and community member, by her son filmmaker Tim Chaffee. Barbara was at the forefront of treating AIDS patients in Binghamton back before HIV was well understood. She was a compassionate and caring person in whatever situation presented itself and her story should be preserved and shared with the world.

Yes, this is related to fundraising and I have made a small contribution myself, but, no, you don’t have to give money to support the film. If you like the link, please do share it via your blog, twitter, facebook, ello, email, or whatever mechanism you use to get the word out.

With thanks,
JC

http://wildgeesefilms.net/news-timeline/34-just-infrastructure

SoCS: but

I am getting really tired of the word “but” because I have been hearing it so much from my mother-in-law when she is making excuses for not following the advice of her doctors and other members of her health care team.

I know I should be eating six times a day but I have never been a snacker.

I know I should leave out some of the food/dishes, etc, that I need often on the counter rather than hauling them down from high shelves but I hate clutter.

I know I shouldn’t cross my legs when I sit but I’ve been doing it for my whole life and don’t even think about it.

And on and on. There is always a “but.”

I know change is hard, but it needs to happen. We are maybe finally starting to make some progress. She has gained back a tiny bit of the weight she has lost. We now have physical and occupational therapists and a nurse visiting in her home.

We need more progress.

No if, ands, or buts…

Join us for Linda’s Stream of Consciousness Saturday! Learn more about it here:  http://lindaghill.com/2014/11/07/the-friday-reminder-and-prompt-for-socs-november-814/


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Badge by Doobster @Mindful Digressions

Mind? What mind?

The top of JC's mind, or at least, the top of JC's head
The top of JC’s mind, or at least, the top of JC’s head

I’m up in the middle of the night again. Theoretically, I could write a post from the backlog of things I have queued in my head or draft folder, but I don’t have enough sustained focus to do so. Instead, what follows will be (part of) the swirl that constitutes the “top” of my mind at the moment.

* I wonder if I will get my pre-election open letter to Governor Cuomo written before the election. It would be about the fracking moratorium, of course, the emerging science, the threat we feel here of being a sacrifice zone, the need to chuck the current outdated and corrupt draft SGEIS, etc.

* Ebola.  Seriously, people in the US, get a grip!  Other than a few dozen people, your chance of exposure to ebola is non-existent.  If you want to do something useful for your health, get a flu shot – and catch up on any other immunization you might need.  Millions of people have died from flu complications around the world over the years.  It is easy to catch and transmit. Flu vaccine works partly by having lots of people immunized, creating herd immunity to help protect people who can’t be immunized and the percentage of people who will develop flu despite being immunized, who will generally have milder cases because they were immunized than if they had not been.

* So much war and violence.  I don’t actually know if I could write a post about this.  People are – and should be – so much better than this by now.

* The confusing muddle of the synod of the family and evangelization, which will be continuing at least for another year.

* The comfort that the beauty of a glorious Northeast foliage season has been in these past few weeks of dashing about on caretaking duty.

* The rest of my planned follow-up to Smith Alumnae Chorus event posts.

* More chapters to My (Feminist) Story.

* Poetry, which is the one thing I have committed to making progress on, despite the swirl going on in my head.  Truthfully, I’m not doing everything I had intended to with it, but I have made all three meetings of the poetry critique group I have joined and where I have found welcome, help, and acceptance, begun the five-week fall semester of Binghamton Poetry Project, and may even attend, though probably not read at, my first ever open mic next week.  I don’t have the time to do the research I need to figure out submissions, I owe a thoughtful email to a poet friend, and I wish that I had time/brain to write and edit more, but I am giving myself a pat on the back for making some progress.

* At some point, I really will get some of my Hawai’i photos – from May! – in shape to post FB albums and to re-post blog entries with some photos added.  I hope to do this before our next visit to the Islands…

* Spiritual matters.  There is so much going on  – experiences with our elder and younger generations, a recent parish mission, studying Richard Rohr’s Immortal Diamond, missing contact with my spiritual mentor/companion and other friends with whom I can share soul-conversation.

* An update to my empty nest post.  Something along the lines of when the sandwich generation goes open-face…

Maybe I should attempt some more sleep before dawn.  Or attack the mounds of mail that arrived this week…  At least I attended vigil Mass yesterday so I don’t need to drive about and try to be attentive for church this morning.  And B. promised to make us a nice Sunday breakfast this morning.

SoCS: sad shape

It’s actually Friday and I just read the prompt which is the word “shape”.  I figured I needed to write now, because my time is very unpredictable these days, so here we go.

My mother-in-law is in sad shape. I don’t know if that is a term that people are using now or not. I remember hearing it when I was growing up.

A backache she woke up with on Sept. 7 tuned out to be from a compression fracture of her L1 vertebra. By the time we got to the neurosurgeon and they did an MRI, the vertebra had collapsed. She spent two days in the hospital in order to have a procedure where they inject bone cement to stabilize the bone fragments. If the procedure had been done when it was still a compression fracture, they would have put balloons in and injected the cement to stabilize and shore up that vertebra, but once it is collapsed, it isn’t possible to retain the function. Also, the chance for fast pain relief would have been much better.

As it is, progress is very slow. She is on strong pain meds and does best when she is lying down, except that she needs to be up and about to get stronger so that she can start physical therapy and build her core muscles and leg muscles so that she can function and perform daily tasks.  Unfortunately, she didn’t have a big appetite before and this has reduced her to not having an appetite at all, so she has lost weight. It’s all turned into a muddle of meds and side effects and one thing making another thing harder to do.

As you might expect, my spouse and I have been up there a lot and have been bringing her to appointments and running errands and talking to the health professionals and trying to get her to eat and helping with laundry and bringing in the mail and so forth.

This afternoon, I kind of hit the wall. I can’t tell the whole story – privacy and such – but I do think that I may finally have gotten her to realize that she has to be the one to actually make up her mind to get better.  She has to stop saying “I know I need to eat and drink more” and actually do it, instead of making excuses. If she doesn’t, she isn’t going to maintain her weight, much less gain what she needs to. She has to want to get stronger and make up her mind to do it, instead of putting energy into self-pity.

We can’t do this for her. She has to do it for herself.

I am exhausted by it all and really wanted to have a good cry about it, but couldn’t quite manage it.  The eyes watering while cutting up some onions to make ham and scalloped potatoes for dinner doesn’t count.  Maybe later…

This post is part of Linda’s Stream of Consciousness Saturdays. Join us! Find out more about it here:  http://lindaghill.com/2014/10/17/the-friday-reminder-and-prompt-for-socs-october-1814/

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Badge by Doobster @Mindful Digressions

Blog fail times two

After working through most of the aftermath of my parents’ medical misadventures in August, I had the foolish idea that I could make plans for the fall.  The problem wasn’t making the plans as much as executing them…

In the rule of things happening in sets of three, the third member of our family’s elder generation has had medical issues which have necessitated major time commitments and the further jettisoning of things from my already pared down but still lengthy to-do list.

I had signed up for Blogging 101, reasoning that, even though I have been blogging for a year, I still struggle with some of the mechanics of blogging and could use some help. While I managed to do a few assignments the first couple of weeks, I haven’t had time to even look at the site since then, so Blog Fail #1.

Yesterday, I read the email and pingbacks that Some Kernels of Truth had nominated me for the “One Lovely Blog” Award with a touching paragraph about Top of JC’s Mind.  I am so honored and humbled, but I know that I can’t do justice to fulfilling the requirements of acceptance.  Blog Fail #2.

While a large part of these failures is lack of time, the larger problem is lack of brain power.  Even when I can get online time, my mind is running through medical information and planning practicalities for the coming days.

I would urge you to click on the links above and check out the truly lovely Some Kernels of Truth and all of the listed links.  It will be at least partial redemption of Blog Fail #2.

JC

54

Today is my 54th birthday. Not usually considered a milestone birthday, but it is a poignant one for me. Fifty-four is the perpetual age of my friend Angie.

Angie called us “October babes.”  She was born in 1950 and I in 1960.  It didn’t feel like we were ten years apart in age because we had children in the same grades in school, although – bonus for me – she also had a child who was two years ahead of my elder daughter in school, which meant that I had a preview of coming attractions.

We were different in a lot of ways. I’m 5′ 1.5″ and Angie told people she was 5′ 12″ because she thought it sounded less daunting than saying she was six feet.  Angie was raised in New York City and thought of our mutual home now as small.  I was raised in a New England town of 200, so our current hometown of 20,000 was as large as the city I traveled twenty miles each way to attend high school.  She was a trained artist and skilled in decorating and entertaining, with a great and quirky personal style, which included rocking her signature look – overalls. (Trust me – it was amazing.) I am not known for any of those things.  She had a great talent for storytelling, complete with different voices and accents for the characters.  I am better with the written word than the spoken word.  She had a vast array of friends in various circles of the community and was well-known, while I had far fewer friends and was more comfortable working behind the scenes.

We were, however, both personally dedicated to volunteering, and met when I joined a site-based decision-making team at our district middle school.  Angie had already been serving as one of three parent representatives and we quickly became friends.  She helped me navigate the surprisingly intricate educational world and introduced me to a lot of new people and ideas.

Even though she had many friends, she was near and dear to all of them.  She was a wonderful listener and a wise advisor. She was unfailingly kind and generous.  The kind of person everyone hopes to have in their life.

Because her husband was a doctor, she had many friends in the medical community, but had a heightened awareness of the possible health calamities that happen to people of various ages.  She talked about being worried about turning 50, because she had known so many people who succumbed to medical problems in that decade.  When she turned 49, I gave her a box with a penny from every year of her life, which meant that I gave it to her with fifty pennies in it, and the promise to give her a new penny each year on her birthday. I thought already having fifty pennies in the box might help ease her into her next birthday.

Within weeks of her 50th birthday, a nagging cough turned into a diagnosis of stage 3 lung cancer.

It was a shock.  Angie had never smoked, but through some combination of factors – growing up in a congested city when vehicles still used leaded gasoline? lung damage from infections? genetic vulnerability? secondhand smoke, as she was growing up before anyone had even thought of smoke-free rooms? – here she was with a frightening diagnosis.

Treatment was aggressive and achieved a remission. There was a big 50+1 birthday party, which served as a charity fundraiser.  But, as we all feared, there were metastases that developed and more treatment with some short breaks but then the next problem and the next round of radiation or chemo until finally around the time Angie turned 54, there was nothing else that could be done.

After the new year started, I began searching for a 2004 penny for her box.  We knew she would not live to see her 55th birthday and I hoped to get the penny to her while she was still able to realize it, but even the coin shops did not have them available so early in the year. Angie died in March.

When I found the penny later in the spring, I sent it to her husband to complete Angie’s box.

I still miss Angie and honor her memory. One of the ways I do that is by donating to the fund set up in her memory which raises money for scholarships and for the LUNGevity Foundation, which supports both lung cancer research and patients and their families.

Another way is to spread as much love as possible and to dedicate as much time as possible to caring about and serving others.

And for this year, Angie and I will both be 54.

SoCS: Find the time

This week’s prompt is “find.”

As I write this, it is not Saturday, but Friday morning. My first thought in reading the prompt was how am I going to find the time to do this and I figured if I didn’t plunge in now, it was not going to get done, so here I am, with the washer running a load of towels, dashing this off before I go back to what I am trying to do today, which is catch up with some of my electronic life, especially my overflowing inbox. 516 emails to deal with, at this second. No doubt it will be more by the time I hit save and schedule.

People who read my blog may recall that my parents had simultaneous health crises this summer.  What I haven’t been blogging about is more recent life complications. I am happy to say that my parents, after losing most of August to recovery, are mostly back to their routines and doing well.  I spent the first part of September battling a GI thing, but recovered in time to prep for and participate in the Alice Parker tribute at Smith, which I wrote about here and here.

Within hours of my return from Northampton, we got word that my mother-in-law has a lumbar compression fracture due to osteoporosis. The time since then has been a blur of appointments, errands, transport duty, trying to get her to eat and use her medications properly, and rest, and not twist or bend or try to do things that put strain on the back, like changing the bedsheets or picking up the paper from the stoop.  There is also a lot of mental energy going to figuring out the next steps, which may include having a neurosurgeon inject a cementing substance into the collapsed vertebra, but first we have to get through an MRI and another consult appointment next week.  And a caucus with my brother-in-law, her elder son, who is a physician but who is several hundred miles away.

Meanwhile, I have been able to carve out some time yesterday and today to tackle the backlog on my computer.  It’s impossible to get to everything, so I am trying to jettison everything I can bear to, while still attempting to create at least a shadow of my presence here at Top of JC’s Mind, through my personal correspondence, and for my Facebook friends.  There are at least half a dozen blog posts that I have in my head that I need to find time to get worked out on screen, unless I suddenly become a stream of consciousness blogger.  No, that would be a bad idea. Forgoing editing once a week is one thing.  All the time?  Shudder…

And, as you read this on Saturday, I will be “celebrating” my birthday. Under the circumstances, original plans have been pared down and even those are vague, pending seeing how today goes for my mother-in-law and what she is like in the morning.  At this point, I’m hoping to be able to at least have dinner out with enough notice that we can wrangle an early dinner reservation at a fine dining type of place.  If push comes to shove, we can go impromptu, even if it means picking up a wood-fired brick-oven pizza and eating it with my husband at the kitchen table. Maybe we can put a candle in it….

519 emails…

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This post is part of Linda’s Stream of Consciousness Saturdays.  Please join us!  Visit http://lindaghill.com/2014/10/03/the-friday-reminder-and-prompt-for-socs-october-414/ to find out how.